More And More Diseases!

I guess I just need to vent. My GI guy called me last week with news that he thinks I have something called Gilberts syndrome and may also have hemochromatosis (iron over load). My other docs office called and won't tell me my lab results on my heart test (predictive for heart attack), and want me to come in this week for echocardiogram (I was already scheduled for one, but they wanted it done sooner after the blood test, so obviously the blood test was abnormal, but they won't say). I am trying not to worry about stuff, and frankly, I am thinking of ditching the docs--they are finding too much wrong with me . I have been having chest pain for awhile, now I am scared it may really have to do with my heart after all, and I am only 30 years old. I really just want to be well...a friend suggested I go to this homeopath she knows, I may just do that. This process of finding out about celiac disease has been a bumpy road and it has seemingly opened a pandoras box in terms of health issues for me. I know most people feel relieved when they get diagnosed with celiac disease. I wish I could say I was one of them. I just needed to vent.

I'm sorry to hear that you are having other health problems, but please don't give up on the doctors too soon. If there is something seriously wrong you should find out now before it gets worse. There are a lot of advancements in medicine, especially having to do with heart disease, and if there is something wrong that can be fixed you should try and find out.

A naturopath might be able to help, too. But I wouldn't put it first over conventional medicine. Just my opinion though. I hope you are alright.

What is Gilberts syndrome anyhow? I hope it is not very bad. And it is amazing that you have iron overload, when most Celiacs are low on iron!

I have heart diesease too! they found it out when they were trying to find out what was wrong with me when it was celiac. i have a five chambered heart but nothing is wrong with it. i actually just had an echo, they're not bad at all. they are actually good because they will tell you if something is wrong with you and that is better than finding out the hard way.

Marianne,
From what I can tell Gilberts sydrome is considered medically benign. It is a problem with bilirubin, you will have elevated bilirubin levels, but the rest of your liver profile will be normal. You may have jaundice with it, and according to one website I read on it there are certain symtoms that can accompany it. My GI doc, said not to worry about it, but he is more concerned with the iron-overload. Yes, he thought it was weird too, being that I have celiac. It is also a genetic disease. He has set me up for a gene test for it to see if in fact I do have it. I have read that it can cause heart problems, so I am a bit worried about my ticker right now. I just had the echo, so we will see what it shows.
Molly,
Did you have any unusual symtoms that made them do the echo on you? Chest pain, palpitations?

Hi Karina,I'm Czech, so you'll need to be a little tolerant of my English. Your symptoms seemed to be similar to mine, so I decided to reply.I too have high iron/bilirubin, but not much, just a bit over the top limit. They seem to be related, when iron is low, bilirubin is low as well. I also have chest pain & palpitations, but there was nothing wrong on my EKG (is it the thing where they put wires on you?). The only thing they found different was quite low blood pressure and a little higher rate. I have been told that heart and lower esophagus share the same nerve, so when you get some reflux, it may seem like a heart problem. Actually, acid lowering drugs helped me a bit. I need to avoid acidic food as well. They tested me a lot for a bug called helicobacter pylori, I had some tests positive, some negative, and when they found celiac panel conclusive, they gave up further testing. I still may have the bug however. I've been gluten-free-CF for 9 months, and still hoping to get better.Anyhow, I hope your heart will be OK.

You and I seem to be on the same path! I was diagnosed with Celiac in late April and I just had my follow-up with the gastro doctor on Thursday - he also mentioned Gilbert's to me since my bilirubin is still elevated - in fact, it's higher than it has been the whole time and this is after having had an ERCP w/sphincterotomy in April (you'd think clearing the bile duct blockage would have made the bilirubin go down instead of up). I also have chest tightness and pains. What bloodwork did they do on you to check that? So far, nobody has even checked that, but I actually forgot to mention it to the gastro dr Thursday (oops). It comes and goes, so if I'm not currently having it, I tend to forget about it. I see my endocrinologist in July, so I am going to ask her a lot of questions - she is actually the one who discovered the Celiac. I have actually been e-mailing with someone who has hemochromatosis, so I will link your post to an e-mail and see if she can answer any questions for you. I was glad to come across your e-mail - I was logging on to post about how darned ANGRY I am about this Celiac and all the extra health problems and reading your e-mail reminds me I am not alone. I'm still really MAD, but it helps knowing somebody understands. I've seen so many rude, uncaring doctors through all this who have told me such stupid things and I'm so sick of hearing "common things are common, rare things are rare." It's their "mantra" and they tend to pigeon-hole your symptoms into being something common and don't look for more and that is how Celiac is being overlooked and we patients are suffering now with multiple diseases because of it. ARGH!!! I already wrote my "angry" post...I suppose I should try to behave in this one!!!

Just wondering how you are doing - did they say you have Gilbert's? Mine hasn't said anything yet, but thank goodness, my bilirubin did come down a little bit in the last test. I was mistaken about the lady I'm e-mailing having hemochromatosis - it turns out her brother has that. I just found out yesterday that my Mom has it, but they told her she just has to go give blood to keep it under control (although I don't know how often). My friend said that is also what her brother does.

Sorry I havn't been aroung for awhile--was busy and actually was trying to stay that way and avoid dwelling on these negative things too much (esp. when I am waiting for test results and can't do anything else in the meantime). Thankyou for all the replies. Mark, have they told you why your bilirubin is high and iron too? Are they not concerned because it is not so high?

Lisa, so sorry to keep you waiting on a response! I am glad your bili came down. Were you jaundiced at all? I have not heard yet on the hemochromotosis--I had a gene test done almost two weeks ago and I am waiting for doc to call--it is my GI and he is always really good about calling me with test results--so he must not have them yet--I will check next week if I do not hear today. He pretty much said I have Gilberts but I will ask him again--he was not concerned about it--said it was nothing to worry about. As for the echocardiogram.....it was completely normal! My CRP was a bit elevated indicating I am at increased risk for a heart attack--this is why they did the echo. I have low BP and pretty normal pulse. They are now checking my cholesterol. I am trying to improve my diet--it used to be good and then when I had to go gluten-free, well I sort of went nuts like having gluten-free icecream every night and stuff . I also need to get back into an exercise routine, more raw foods, less sugar and dairy. These things alone may help that CRP level and it is a healthful way to live. I also think I am going to go to the homeopath I send my daughter to. She has done great things for her and for my friend, so she may be able to give me a constitutional remedy that will help my body get to where it needs to be--well. I will follow up about the cholesterol and the hemochromotosis--although I am hoping after being treated with homeopathy that my levels in everything will improve and I may not even need conventional treatment. I will let you all know how this goes.
God Bless,
Karina

Glad to hear your echo went well!! And it is good that the Gilbert's won't do any harm. I have not been jaundiced, just had the bilirubin creep up and down. I feel like I'm eating too much meat since going gluten-free. I need to find some protein that isn't chicken or beef because I'm going insane!! I eat eggs sometimes for breakfast. I haven't done too much damage with the sweets, since in recent months, they make my stomach hurt, although I did eat a tiny butterfingers and a tiny milkyway since I was really in the mood for some chocolate and I read they were gluten-free. Hopefully, I won't regret eating them!! I need to get to the health food store and stock up on some other stuff so I won't grab the candy. I'm not familiar with homeopathy - how exactly do they treat you? Let me know if it works!! I had the blood drawn for my girls yesterday, so I'll find out in about 10 days whether they have Celiac or not and if they don't, then I'll find out if they have the gene. Good luck! Talk to you later

they didn't tell me why my bilirubin/iron is high, instead of this, they were speculating whether being at high altitudes can affect iron levels, but as they found my erythrocytes normal, they couldn't give any conclusion. Next test I got into normal range, so they were not so concerned. They also mentioned Gilberts, and they told me some people have elevated bilirubin all their life, and there is nothing much wrong about it. In the last test I went just on the top limit. The relationship was just my observation, I forgot to mention it to the doc, but I've found that iron is needed to make hemoglobin and hemoglobin is discarded into bilirubin, so this could be a ground for this relationship. Also, my hemoglobin is a little elevated, but still in normal range.

I have chest pains sometimes, but they are not on the right side. Most often, they are in lower left ribs area or in the middle of chest. I can even find a spot which hurts when pushed. My doc said it could be a pulled muscle but I'm sure it's not. The inflamation of the rib cage is far more possible case, but I'm not sure about it either. I did an interesting experience: while I was having the pain, I drank about 2 cups of water, and the pain stopped almost immediately. - It's not always working, but it gives me some relief often.

My cholesterol level was elevated as well, and I hope it's not going to rise any higher. In addition, I have pretty high antibodies to milk proteins, so I need to cut off all diary as well. In fact, it was much harder for me than going gluten-free.Good luck.

Mark,
my chest pain is mostly left-sided as well and it is possible it is just costochondritis--but I needed to rule out cardiac of course. I know what you mean about the dairy--that would be very hard for me--I know I should probably cut down on it at the least as so many alternative health practitioners do not like dairy and I may have a sensitivity to it and do not know about it.

Lisa,
Homeopathy (from my layman perspective) is treating the whole person with a "remedy" that is made from natural substances (not really herbs). The homeopath spends time with the person, interviewing them, reviewing their medical history, disussing physical and emotional complaints, and then they come up with what is called a constitional remedy for that person--this takes care of everything for the person--they do not take additional homeopathic remedies or allopathic (conventional medicine) remedies for acute needs unless is is absolutely neccessary and usually it is not. For those not on medicines for chronic ailments and for those who can stop drinking coffee completely, they can take just a one time dose (may have to be repeated at some point).

In the case of my daughter, she was just one year old and suffering from chronic ear infections. Conventional medicine wanted to put her on allergy meds and inhalers and discuss tubes for her ears--she was just one! I took her to the homeopath, as well as cutting dairy and delaying further vaccines. Well no more ear infections or terrible colds (despite plenty of exposure), or severe allery symptoms. She is free to be her happy healthy little self and it has been well over a year. When sickness goes through our house she often doesn't get it when everyone else will and when she does it is less severe. Homeopathy treats the whole person--strengthening your body so that it will fight off illness and disease on its own--as many believe it was meant to do. My friend was basically cured of her life-long chronic asthma as well as migraines! I was very skeptical at first, but not so much now.
Karina

Very interesting about the bilirubin!! When I started having GI issues (back 13 years ago), it showed up high in my blood profile. After other blood tests showed my liver was normal, the doc threw out the high bilirubin as a false positive. Why do they do that? Anyway, I'm still trying to find out what's wrong